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Dr's saying colonoscopy not needed!!!

vchildbeloved

Posts: 133
Joined: May 2008

Jan 09, 2010 - 11:26 pm

Hello, It's been a while since my last post. Diagnosed 4/08 stage III colon cancer, 1 out of 18 nodes positive. Surgery, then 8 months treatment. My last colonoscopy was 1/27/09. according to me I'm due for one. I have a family history of HNPCC (hereditary nonpolyposis colon cancer). I've tested positive. My doctors told me Friday that I'm not scheduled for one again for 4/5 years. I'm pretty upset about that. I'm going to insist on 1 every year. Am I being overly concerned, or am I right for insisting on a colonoscopy yearly for at least the first 5 years post surgery? Thanks for listening.

That has to be scary, huh? I mean I would have to have the peace of mind to know that things are alright. Even if I had to pay it out of my pocket, but if you have insurance, that would be doubtful since you've already done the chemo/surgery thing. They'll pay for a follow-up scope, I would hope.

I think you have a right to insist on one, being that you're positive for HNPCC. If he still refuses, I think I'd go to another gastro or surgeon.

I don't post often anymore but I had to leave my computer for a while before I responded to your post. Good for you for second guessing this.

DON'T WALK, RUN TO ANOTHER DOCTOR!!!

I think your current one is on some serious drugs. Insist on a colonscopy or tell him/her you will find an oncologist that will (which won't be hard). You know I don't think I could go back to a doctor that knows my background and doesn't want to work with me on my recovery and maintenance plan.

When it comes out clear, you can go from there.

In the meantime I'd be interested to hear from those with HNPCC that are NED and how often they get scopes.

Thank you all for your words of advice. I guess I knew the answer, but just wanted to voice my disgust with this. My father died of this disease, my brother had it 8 years ago, 6 months after I was diagnosed, my 32 year old son was diagnosed with same cancer. I am calling my doctor's office tomorrow and if I don't get another response, I'm going elsewhere. I pay my medical insurance each month so that I will have great medical attention. Right now I don't believe that is the case. Scouty, that is a great idea you have for those with HNPCC to let me know how often they receive scopes. Again thanks a million for listening.

Hi Valerie,
I have HNPCC and reccomendations are colonoscopy every one to two years.
My gastro doctor is in charge of keeping me updated on reccomendations not my oncologist.
I have had yearly colonoscopy with endoscope because of high risk of stomach cancer since 2005 when stage III colon cancer was found. Please be aware of high risk for Endrometrial Cancer also.
Were you given material listing increased cancer risks and reccomendations when you were given HNPCC test results?
My under standing is with this disorder a polop can turn into cancer within 18 months as opposed to years it takes for people without this genetic defect.
I have had three oncologists due to turn over in large medical center, my second said annual colonoscopy was excessive because he had no idea of what HNPPCC entailed. I left him as soon as I could.
Janet

My gastro doctor is the one telling me to come back in 2012. I told my oncologist that I was not comfortable with that. Another post ask me why I still have my colon, well I wasn't tested until after surgery when the cancer was found. My surgeon later told me that had he known he would have suggested that to me. Yes, I was given the materials on various other cancers. Is ther a way to speak with you by e-mail; I really would like to talk with you further. Thank you for your advice.

We had the same problem with my husband's first gastro -- we had NO clue what hnpcc was even tho my hubby had already lost his father/brother and was getting his first scope at 35 (to be safe) he had 3 in 7 yrs, with the last one finding 2 tumors...there was no doubt his colon was coming out even before we knew he tested positive for the msh2 gene mutation (him/sister have a rare mutation -- the genetic lab has only found the mutation in 5 people, and 2 of them are him/sister

but we got his disabled brother to get a scope just a few months ago and his gastro told him 3-5 yrs too and we said, no way, no how -- every year

too many gastros do NOT understand about hnpcc and my hubby's first GI doctor almost cost him his life -- 3-6 more months it would have been too late -- both of his tumors were poorly differentiated with one of them being signet ring cell

definitely needed -- my husband has hnpcc, dx 3b in sept, going thru 3rd tx now -- his father/brother both had it/died from it and his sister is positive for the gene mutation, his colon was taken ALL out at surgery, I'm a little surprised u still have yours... we have read and have been told by several doctors/board-certified colorectal surgeons that if u have hnpcc, u shouldn't keep your colon... my husband will have yearly rectal scopes now

As an alternative to seeking new doctors, you could just assume that you'll be having a colonoscopy after one year, which is usual. When the year is up, just call to schedule your first follow up colonoscopy. Maybe they'll just go ahead and schedule it. If there's a question, you can pursue the matter then. (For those without HNPCC, I don't think it is usual to have colonoscopies every year after the first follow up --- I was told once every three years.)

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